Tampa area BCO sisters get togethers

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  • MaryLW
    MaryLW Member Posts: 2,172
    edited October 2013


    yes, that's what mine says.

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    I can't recall who else might have Rheumatoid Arthritis. Again I've hit another flare with pretty swollen hands and quite painful wrists.


    It's good to know the VA Hospital is open, even though running on less staff, so at least they were able to get me in and be seen. Today med was changed to Sulfasalzine (brand name - Azulfidine).


    Prior Rheumatologist indicated it would be bad to use this Dmards (ie Methotrexate et al as the class of drugs lowers the immune system. Different Rheumatologist today says it whould be okay, since it's a drastically reduced dosage than that at any chemo level, etc. Flat out told her I wouldn't do any thing like Methotrexate without checking with Oncologist, which she agreed would be proper.


    Any one else dealing with this stuff, feel free to jump on in.

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013


    Spookiesmom- Sorry I am coming in late on this thread and ( just visiting ) actually moved from the Tampa Bay- Safety Harbor area a year ago to the Seattle area. I had my surgery at Moffitt Feb 2006. Dr Charles Cox. I waited almost 3 months for surgery then Moffitt said could not fit me in for chemo for another 2 months. I consulted a super group of docs I had worked with for advice and they told me they worked with Dr David Wright and group near St Joes. ( I think Gulf Cost Oncology now ) He was super and very understanding. His own mother had BC. A year after chemo I moved to Safety Harbor and transferred to Dr Gregoire Benoir at Fl Cancer Spec. ( I really liked him and always took time to talk regardless of how busy he was. At the time of diagnosis I was not very pleased with Moffit. They treated me like a number and let you sit in a paper gown for up to an hour waiting -very impersonal. Clinic was nasty ( now been revamped and nicer I am told) The inpatient unit was great and vey attentive. I cannot say that about the surgeons there who sent a resident DR to discharge me who had not even been in the OR and could not answer my questions.


    I am sure much has changed since then and just wish I had hooked up w/a group back then. No one except another survivor really knows what you are going thru.


    Send a little sun and sand my way :))


    Rene

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2013


    thanks, sun and sand coming your way! I wish I could stay with Fl Cancer. But Humana has decreed no.


    Moffitt has always been my plan B, will see what happens.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    spookiesmom - was today your DH's b-day? Mine too!

  • ameron
    ameron Member Posts: 98
    edited October 2013


    Hi Girls!


    Weighing in on a few topics here. First the Medicare Gold Plan problems everyone is posting about. When I went on meidcare a while ago, I was a bit overwhelmed by all the plan options. They felt a bit gimicky, but I'm skeptical of things like that anyway. I have to admit that even though there were years in my career when i selected and administered plans for the company I worked for, I never had to use my plans because until I got cancer never had anything more than an annual gyno checkup. I still find it very difficult to compare all the plans and more importantly just don't like dealing with the bureaucracy of it all. There is nothing more stressful to me than the stress of dealing with a major medical issue and not be able to get a clear answer on whats covered, wait for the insurance gods to approve a treatment, and then later find out you got bad info and a large bill arrives. I consulted Fl Cancer Specialist when I selected my insurance and they said going with straight medicare, and not of the various "plans" was the simplest. You don't get hassled for tests. Nothing has to be "approved", etc and few treatments are denied. So even though it only covers 80% I decided I would rather not be hassled by billing and rules and just go with that coverage. Drs. seem to like straight medicare for the same reason. I've never had a problem with it and love that. Maybe that will change, but that is what I went with. I couldn't get the additional gap type coverage for the 20% because at my age it was crazy expensive. If I were older it would be much cheaper.


    My next question is for GALSAL: what are the signs of arthritis you have? I'm actually waiting to see my primary because my lymphodema hand is in severe pain. Fingers are swelling at the bottoms at the top of my hand is really painful and swelling a bit. I was afraid i had infection from lymphodema, but everyone seems to say yep that is arthritis. I've had it in my finger joints and its annoying and painful but not affecting my entire hand. Is this similar to your symptoms? If so, this is potentially really bad. Can you use your hand or is it always in pain. I'm perplexed about this new symptom but it sounds like yours.

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2013


    Special K his bday was the 7th. This is the bday month though. Grand#2 was the 4th, DH 7th, DD the 16th, and Spookie the 31.


    Lots of cake and ice cream!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    ameron - crappity crap! You need the use of your hands to do your thing! I developed triggers due to hormonal therapy but they resolved. Had to have a cortisone injection in my knee for arthritis type pain, but that has resolved with a hormonal therapy drug change, so I am more likely to blame the drug than the arthritis. What about the possibility of cellulitis in that arm/hand?

  • ameron
    ameron Member Posts: 98
    edited October 2013


    Hi Special K, yes of course I'm concerned about celulitis too. Esp. since it can get ugly quickly. My primary can't see me for a while. I guess a walkin clinic might be in order? Not sure.

  • GrammyR
    GrammyR Member Posts: 702
    edited October 2013


    Ameron- if the swelling is on your BC arm then you need to be seen asap as a possible CT needed Preferably a BC specialist. My re- occurance started w/ hand, arm pain. If you have a fever or a recent hand injury-bug bite coud be


    more likely the cellulitis. I am a retired RN and ER nurse but no specialist by any means. safest to get it checked out.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    grammy - I am curious about your hand/arm pain and recurrence - I have bi-lat LE and have intermittent pain in the cancer side arm/hand, which has the more severe LE. Where was your mets and how was your hand/arm involved? I worry about being able to discern what is LE discomfort and what might be more serious. I apologize if I am being too nosy!

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    Thankfully (?), the hand most affected is not the BC and SNB side. I've had RA since age 22. It's just gotten to where it flares several times a year now, since being on an AI (Aromasin) and having zero Estrogen. This flare is less intense than when I was on Femara, so far. Changing to the med to something stronger was done for two reasons - to reduce the flares and keep me going with an AI since I'm only into it less than two years at this point.


    The fingers and hand swell, but the pain is specific to and refers from several finger joints and the wrist itself.


    Hmmm...I'm not wanting to be over optimistic but, the shoulder that had the injection feels better. Did have a big massage appt on it last evening too though, so I'm holding off on full result reporting at this time. I was fortunate that the Intern yesterday had been Navy for eight years, so entirely understood when explained I'd injured it on an Army boat by slamming it into a steel wall of the wheelhouse in 1995. Thank you Lord, it has taken me YEARS to get any one to pay attention to that shoulder beyond drugs or pt/ot about it!


    Thanks for asking. I did ask at work and our health insurance is fine for all the new hoopla happening these days. Aside from that, I'm covered under the VA too but that will only help so long as they remain open.

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    Ladies, I've done some thing SO very outside of my comfort zone. I've registered to attend a pre-dating speed dating event up your way, SpecialK. Yes, I've thrown it out into the open with you all!


    So throw some topics, questions, etc my way. I'm socially challenged at times. :)

  • ameron
    ameron Member Posts: 98
    edited October 2013


    So my thyroid biopsy came back inconclusive. I have to go for an ultrasound guided biopsy now. So the stress continues.... From what I've read this is pretty common to get inconclusive results from needle biopsy on thyroid. Anyone else had to get retested with good results???

  • AnnAlive
    AnnAlive Member Posts: 450
    edited October 2013


    ameron - my ultrasound-guided thyroid biopsy in June was inconclusive. I will have another ultrasound later to compare and see if any nodules are large enough to get a better sample to biopsy. This is evidently very common to have insufficient samples, and it is also very common that results of a good sample turn out to be benign. So I'm in a holding pattern too, dealing with other issues (adrenal fatigue), seeing a doctor in Orlando to get thyroid/adrenal hormones balanced. I'm hoping this will also help reduce the thyroid nodules. I take Iodoral (iodine & iodide) and also a natural desiccated thyroid (prescription) I order from Canada, but is like Armour.


    I hope you get yours settled, and the insurance/Medicare frustration too! Distressing seeing all the confusion around healthcare now, and likely to get worse.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    galsal - I don't know if I could come up with interesting topics for speed dating - I would ask ridiculous stuff like if you could be any animal what would it be and why? .... If you google "best speed dating questions" there are a bunch.

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    Is any one going to attend the Bucs game event sponsored by Moffitt this Sunday?

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    Good thoughts and prayers for you, Ameron

  • MaryLW
    MaryLW Member Posts: 2,172
    edited October 2013


    my thyroid biopsy results were inconclusive, but my MO said he was sure it was cancer. I had the left lobe removed, and it was cancer. I've had no trouble with it since the surgery, although I have to take thyroid medication.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    galsal - I will be at the Buc's game but not connected to Moffitt. Are you going?

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    yes, I am. just realized I'm not supposed to be in the sun much with this new med. grateful for a female Vet I know is a security officer that is hooking me up to get into a club suite too. Son will likely be with me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I just got an email yesterday offering tickets to the Bucs game. I'm trying to figure out how I'm going to pick up tickets between 10-11 when I'm supposed to be at church at that time. My sister, who is going with me, is teaching so can't leave early. I guess I'll be driving down, picking up the tickets, driving back to get my sister, and then heading down there again. I don't really need to be in the sun for that long anyway, right?!?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    We three should figure out a place to meet up and say hello!

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    private message cell phone numbers in case some one is missing one!

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2013


    enjoy the game! Shouldn't be so stinkin' hot!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    galsal - I have you and you have me - I don't have nbnotes, do you? I will be there with my former boss (I go in on her extra season ticket) and my DH will be up at the pirate flag in section 312. My BIL/SIL will also be there. I am able to access the club area with the staff passes from working the pirate flags, if you will be in a box.

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    Thanks, K! No clue of where we're all sitting. Son's hitting up his friend's family that has a parking area by the stadium for us to use, told him I'd pay of course. I'm not schlepping all over the place any more than I have to.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I have no idea where I'll be sitting, but I just sent you both a pm with my phone number.

  • Galsal
    Galsal Member Posts: 1,886
    edited October 2013


    got it...see you there!

  • Lee7
    Lee7 Member Posts: 657
    edited October 2013


    Checking in to see how everyone is doing. I guess you're all at the Buc's game ! I am afraid I am sports challenged coz I don't think I could name one player. :(


    ameron, hope the thyroid all turns out fine. I have a blip on mine they keep ultrasounding but haven't said anything about wanting to biopsy. I guess they will if it changes.


    I'm switching AI's. I'm starting femara tomorrow (finally trying it). Wish me luck and LESS of those nasty side effects we all know too well.

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